Thursday fear

So I sorta felt extra crappy on Thursday. It was similar to the feeling I had before I ended up in the hospital from neutropenic fever last time. I was worried about a potential for white cell drop. I had this haunting low-grade fever all night Thursday. It peaked at 100.3 and I'm supposed to go to the emergency room at 100.5. Needless to say, I put a rag on my head all night and didn't sleep.

We dropped the kids off at school and made a semi-surprise visit to the Clinic at Vanderbilt. I had blood-work drawn and within 20 minutes had my white counts (2,800). This is down from over 14,000 for those of you keeping up. Plenty of you probably see a disturbing progression in those numbers. My counts were wiped from 14k to 3k in 4 days. I was really worried that they'd be sitting at zero by Sunday and I'd be stuck heading into the emergency room.

Dr. Greer agreed to a Neupogen shot plus we kept our regularly scheduled Monday visit for blood work as well. I'm going to graph this to try to create a predictor of my response to Neupogen. As it stands, my gut feeling tells me that my body is wildly sensitive to the effects of chemo and is also wildly affected by Neupogen. While it would be nice to smooth out the peaks and valleys, I am grateful that I respond to Neupogen.

My experience with Neupogen was that the first shot did not cause bone pain and the second shot did. This is a flawed observation. Now that I've had the opportunity to receive only one shot, it's clear that the pain in my lower back / pelvis is just delayed by 1 day. The pain is moderate compared to the pain of two shots separated by 24 hours. Two sequential shots created pain that was basically unsleepable (it's my new verb, shut up) without a pain reliever. One shot is sleepable for me.

I had pretty serious chemo brain through Friday evening and it just 'broke' Friday night. Part of me wonders if a dwindling white count adds to chemo brain. I had this great idea for a PORT that constantly analyzes my blood content and that I could plug my iPhone into. Or better yet, some sort of meter like the blood oxygen monitor that is non-invasive and can relay white counts via wifi to the iPhone.

That's the update. I'm hoping that I've avoided a hospital stay for this session and learned a valuable lesson about managing my white counts. It's a relief to have a plan. Oh, and my superclavicular nodes are reduced visibly and to the touch.

Sincere thanks to my friends and family. I hear that Emily is organizing a run. Carneal, thanks, enough said. Tric, make the hat but I may not lose my hair, shave Tim's head either way. Day 23 now. Carey, thank your mom (UT fan making a Vandy hat must have been very painful). Rick and Lisa, thanks for taking the kids far far away. Words cannot describe.... Haynes and Dana, thanks for the moral support. TP and Kellie Conn, thanks for the calls.

Second Chemo Treament complete

I feel like a veteran already. Step One was to get some bloodwork completed. The results: my white count was at 14,200. Go Neupogen! That stuff rocks. Platelet counts were good and red blood cell count was marginal but still in the safe zone. The ABVD regiment took about 3 hours as expected. Starting to get that gentle hungover feeling and have taken the first drowsy-style anti-nausea drug. The next few days will be a bit slow.

We learned that the body is most run down 7-10 days from Chemo. As a precaution, we decided to do white counts 6 days from today. The thought here is to get a Neupogen injection on day 6 to help weather days 7-10 if it seems necessary.

1/6 complete, March 5, I'll be 1/4 through.

Home again

I came home Friday night. Karen had completely disinfected the house and Lisa took the kids with her to Ohio. They were all sick in one way or the other. They are on antibiotics and hopefully will return germ free on Sunday evening. I cannot wait to see them. It's been about a week. It was a great feeling being in my own home and sleeping in my own bed. It's nice to be back.

Checking out of the Hospital

My white counts came up to 2300 after the second Neupogen shot...from 600 the day before. It came at a price during the night. I had an exceptionally sore lower back and combination heartburn, chest pain. Very uncomfortable sensations all around. They gave me a unit of Morphine which only dulled the lower back pain and made the heartburn worse. Whatever they gave me to treat the heartburn didn't work at all. Honestly, I'm not positive that it was heartburn. The pain as it turns out is the Neupogen's effect on the bone marrow. It stimulates white blood cell growth which occurs in the marrow. Once I realized this, I made some peace with the pain knowing that it was fixing me.

Your mind and body play tricks on each other at night in this condition. I went through bouts of trying to will the pain away followed by tossing and turning. I got up to research others' experiences. This was probably the most helpful activity.

The doctors justify no use of ibuprofen because they don't want it to mask a potential fever. I understand it in my case where they needed to verify 24 hours of zero fever before I left the hospital, but for future doses of Neupogen, I'm going to take some Ibuprofen shortly after the shot. For me, the pain lasted about 12 hours at a higher threshold than I would care to impose upon anyone for any reason....lesson learned. The reward was clearly evident thought. I had counts of 2300, up from 600, 6 hours from the injection. Counts of over 1000 are basically mandatory and above 4000 preferable. Since Neupogen continues to work well after the 6 hour mark (and since my back still mildly hurts), I think it's safe to say that my white count will continue to rise for a period of time.

The silver lining to this story is that the nodes above my collarbone feel visibly less bulky, still there, but not nearly as chunky after just 1 treatment. In addition, Karen and I have had some of the most heartfelt conversations and crying sessions as we both realize how bizarre and fragile this short ride really is. I can honestly say that I've never cried as hard as I cried once I heard that my white counts were up to 2300. Besides my fever breaking the night before, it's the first glimmer of hope that these procedures actually work as intended.

I'm not sure how you'll achieve this in your life, but have you ever had tears of joy? I'm not talking about the few tears that fall out while you enjoy a happy moment. I'm talking about a full-on blubbering that you can't stop because you are so happy and relieved. It was a first for me and it is an incredibly liberating experience.

Proof of very attractive nurses

Me in the ER

Hot Nurses

So,

I seem to be getting more than my fair share of hot nurses. One hot nurse was shadowing another hot nurse last night so 2 of them came into the room each time. Then, moments ago, another hot nursing student came in to take my vitals. I thought it was worth mentioning. Those of you praying for me, throw in some hot nurses while your at it. Quite the morale booster!

Temperature has broken

Sitting in the hospital, it's almost 7am on Thursday. I am so relieved the my temperature seems to have broken. My latest white blood cell count is at 600, up from as low as 200. The Nupogen shot was likely responsible for that. It's a steroid that stimulates marrow production of blood. Unfortunately, it's an equal opportunity stimulator. It will stimulate the cancerous white blood cells in addition to the healthy ones. It seems that the Dr. who told me that was wrong. Awesome.

Conclusions: Never put myself in a position to get sick again. Our house will be sterile and I will have a specific room in which to work, wash my hands constantly, wipe down surfaces, eat only cooked foods, wear a face mask anytime I am in public.

How quickly things can change

I woke up yesterday morning with muscle aches. This escalated into a fever of 101.2 by 1:30pm. Karen and I went to the hospital to have it looked at. After some blood work, they found that my white counts were at 600, significantly lower than the 1000 minimum. They put me on about 5 different antibiotics through my PORT. They finally moved me from the ER to a hospital room at 2am. The fever was really not managed until around 6am. It was a huge relief when it came down. It's almost 11 now and I am tired, but cannot sleep due to a headache.

In a nutshell, I have learned a valuable lesson regarding the importance of remaining isolated from germs. The train show on Sunday was clearly a bad idea.

Money

I finally found some information that is interesting and not morbid in any way. Most of you know my small obsession with Capitalism. I recommend insurance. Remember the PET scan that I talked about sleeping through? The price tag is equivalent to sleeping through 2 months of classes at Vanderbilt....come to think of it, I may have done that too. Sorry Mom :(

I'm posting images of my current charges so far. It is really quite staggering that I ran up a $30k bill in under 1 week. Under 1 week and I wasn't even hospitalized through any of this! Damn! Jeff, if I don't hear some color commentary from you, I'm going to be truly pissed.

Summary


Medical Center Summary


Medical Detail 1


Medical Detail 2


Medical Detail 3


PORT Installation

Lung Performance

This is really just so I can remember to ask my doctor to look at my lungs after the 4th treatment when I go in for my PET scan:

Fewer posts means I'm feeling better!

Well, ever since day 5 (it's now day 11), my overall feeling has been 'normal'. I still tend to run out of juice after a half day, but the hangover feeling is basically gone. Counting the days until Thursday when my next chemo round happens. I'm actually looking forward to it. Sorta odd, but if it's the solution, gimme more!

The cuts are healing well and the hair is still firmly in place. Tim came over to the house with Bella and Matthew and crashed here on Friday and the Chandler's came over with their kids on Saturday night. Thanks again for the kind words. I'll try to post another blog on Thursday. That's my next chemo day. Thanks for all the kind words...

Day 5

I've talked to a few of you on the phone trying to explain how chemo 'feels'. Imagine waking up with a bad hangover. Now, stumble out of bed, get some liquids and a decent breakfast in you. Then, after the headache goes away, that's how you feel. It's like the rest of the day after the bad hangover. Since my friends are reading this, I know that you have all experienced this on a regular basis, until you had kids at least, well at least you should have stopped such childish behavior after having children.

Speaking of children, does everyone know that Tim is working on number seven?

The last 4 days were a bit foggy. Today felt much better. Thanks for all the comments. It is great coming back to the site and seeing your replies. Jen Millard. Talk about a blast from the past. Hope all is well with you.

Sleepy Time

I woke up Saturday morning, ate something, dropped a buddy's server in the datacenter and stopped by Karen's sister's house to say hi and fell asleep for for 3.5 hours. Karen woke me up, brought me home and I slept from 9pm to 9am. Just woke up a few minutes ago and decided to write something. Thanks for all the nice comments on the previous post. Jeanne, it's good to hear from you as well. I've eased off the anti-nausea medication and am hoping that I can keep it that way.

In a nutshell, this first round of Chemo has just made me tired for the most part. Karen found this guy who markets hilarious products. Here is a pic of one of them.

Subtle effects night 1

Five hours after my first treament, I'm feeling relaxed with a moderate headache in the top of my head. I usually get headaches in the temples so it's a strange feeling. The nurse said that the anti nausea provided during treatment was supposed to last 12 hours, but it seems to be wearing off a bit sooner so I went ahead and popped the first oral med for that at 10pm. The feeling is a bit surreal, but not painful or particularly frightening. Probably the oddest things are the somewhat random cold sensation and hot flashes. Disconcerting is probably the best word. Oh, and Jack said that my breath smells like 'poop'. That's his generic word for bad. I brushed but the chemo is so strong that it actually leaves you with 'medicine breath' to a pretty high degree. Oh, yeah and the fairly cute girl who administered my chemo indicated no 'hide the hotdog' for 48 hours. I think she's trying to break up my marriage in her passive aggressive way. I don't blame her. My port is pretty hot. I'm writing because I'd rather not try to go to sleep. Hoping I will just fall asleep at the keyboard.

Tim Moses and I had a great video chat over iChat while I was receiving the treatment today. Somehow he managed to keep his clothes on. Jeff, you're next.

So the way I see it, life is a beautiful thing. It's here for us to take chances, pursue dreams, fall in love, carry on meaningful conversations, laugh at one another, show compassion towards others, find the win-win in business and personal interactions, and teach our kids the same. I think I've always known these things and have practiced it within limits. We all know the areas in which we each fall short and are often afraid to admit it. But fixing the little defects in ourselves one by one can be the most rewarding achievements. Even the tiny ones.

No to overly politicize this, but more than ever I believe that proper treatment of various ailments cannot be varied based upon ability to pay. I am no more deserving of the incredible professionals at my disposal than a destitute homeless person. My life is no more important than his or hers. I'll happily help foot the bill for those in need because I strongly believe that our forefathers missed a major point when they stated only life, liberty and pursuit of happiness. Health would have been a nice word along with those three.

Writing helps keep my mind off of my body so I expect I'll be doing it often.

Home now

News flash. The chemo with port is definitely not the hard part from my perspective. My parents picked up Jack and had dinner ready. Thanks guys! Also, thanks to Karen's mom the night before. Family is a wonderful thing. Sources say that late Saturday and Sunday will be the worst and the hair should start going away in about 2 weeks. Right now, I feel great with no perceived immediate effects of the chemo drugs. More as I know it.

Hooked up to the machine

Well,

I'm sitting in the room getting toxic drugs pushed into my body. I'm on the "D" of my ABVD regimen so I'm almost finished. Apparently the "D" takes about an hour. It's wrapped in aluminum foil so it's not exposed to light. Light breaks it down and reduces its effectiveness. So, I decided to include some pics as well...enjoy!

Good Drugs

Thanks Chris for this clip....

First Day of Chemo Tomorrow

Looking forward to the first treatment. I am anxious to see how my body reacts. I've heard so many conflicting reports. Jack told me that if I lose my hair, he's going to shave his little head. Love that kid!

PET Scan

So they made me drink a pretty tasty red juice and then injected me with a radioactive substance. I had to wait an hour. I slept because I was still tired from the PORT installation. I had a total of 200 units of versed for the port installation, at least I think it was versed. That stuff is great! "Hey can I put a hole in your chest?" Sure, that's cool.....whatever man. Unbelievable.

I basically slept on the CT platform during the PET. I probably went in and out on it for 45 minutes while half asleep. It was actually incredibly relaxing until they did the final CT. CT's sorta suck because of the synthetic iodine injection. When it goes in your IV, it warms your groin (feels like you've peed on yourself but haven't). It creates an odd metallic taste in the back of your mouth and, for me, causes momentary stomach nausea (maybe 1.5 minutes). It's just long enough to make you think you need to puke without actually puking.

Once all this was over, I was freaking wiped. Came home, took 800mg ibuprofen, ate a big roast beef sammy, a banana, cookies and drank fluids. Karen purchased all kinds of things for promoting healthy flora in me to reduce chemo toxicity. I'll detail it in another post. I'm pretty tired.

Versed is my friend

Well I've completed the echo scan and the port so far today. The echo was pretty much just an ultrasound for the heart. Completely non-invasive. Cold and squishy. The live video of my heart was pretty cool to watch.

The port process was intimidating at first. The procedure is completed while conscious. But, Valium and versed did a remarkable job of allowing me to not care. 17 cm tube connects the port to a vein which leads directly into the heart. The tube is pushed all the way into the heart. Those under going chemo are making a wise decision to have a port installed based on my experience so far. While you might be scared at the prospect of a 17 cm tube being inserted into you while conscious, I can assure you that it was a painless and relatively pleasant experience.

Now we are waiting for the pet scan. Should be able to head home in a couple of hours and eat! I wonder if I'll remember dictating this to my wife?

I have Hodgkins Lymphoma

Thanks to my friends for caring. I'll keep a diary here including pretty much everything that I'm going through. Hopefully it can serve to keep my friends informed and maybe help others who have to go through similar tests and treatments.

The process of reaching a diagnosis was random. I've had bouts of being tired in the afternoon with lower back pain and a low grade fever off and on for a couple of months. A drink or focused activity seemed to exacerbate the problem (I just thought I was getting old). I am 39. After one bout of fatigue in Cincinnati, I woke up with swollen nodes above my left collar bone. The Internet is like a horror flick when you plug that symptom into Google.

My primary care physician ordered a chest Xray and, based on the result, ordered a CT. They found a small mass in my Media Stenum (mid chest) in addition to the left collar bone nodes. After a visit to an Oncologist and another CT of my abdomen, we found 2 more spots. So 4 swollen lymph nodes.

We had a surgeon biopsy the easily accessible node in my collar bone and the finding was nodular schlerosing hodgkins lymphoma. I am getting a PET scan and ECHO and a Portocatheter on 2/4 and Chemo starts 2/5. Side effects vary, but I'm just happy to get this going. The PET is the best indicator of where the lymphoma is an how active it is so we use the results of the PET to determine effectiveness. The ECHO is a test to ensure my heart is strong enough to handle the rather powerful drugs. Most likely this will come back positive. The Portocatheter is pretty frankenstein if you ask me. It's a port in my chest where they can put in medications without having to stick me in the arm all the time. I hear that it's a smart thing to do. Needless to say, I'm not looking forward to the....er installation.

The chemo will last 6 months and I receive 12 treatments (1 every other week). Doc says I will lose my hair. We already know what that looks like houseboat crew! Talk about life imitating art...the good news is that I should be done with this by the time August rolls around.

Feel free to post comments and questions here.